Saturday, May 21, 2011


Hello, everyone!

All is well at our hospital-away-from-hospital, as Nancy's recovery proceeds and we admire the eruption of springtime in our neighborhood. The hills are rapidly browning around us, as they do each year when the rain stops. And on our walks with Sheba (the faithful german shepherd cancer patient), we've seen the annual cycle of wildflowers.

I can't speak for Nancy, but I do many more of these cycles do I get to witness? The question brings me present, so a casual trip to the grocery store becomes a sun-drenched journey. This will probably be the last spring for Sheba, ancient at 14, who is doing great with her new bladder stent, but is also resting more and more, walking shorter distances. So I play more music (currently a lot of Acoustic Son and Kingsbury English -- thank you Ken and Carolyn), get out of the building for lunch each day at work, and let my worries dissolve in the beauty of our world.

Nancy's progress is steady and good. She's now off of the IV electrolytes, experiencing little nausea, getting her sense of taste back. She still goes to the clinic twice a week for blood chemistry check ups, and still takes a powerful array of drugs four times a day. I remember caring for a friend with AIDS more than twenty years ago, and the experience, the issues, the drugs are all similar. Thank god her prognosis is better. I can't tell you how heartened I feel as things get a little better each day.

We've also had the pleasure of guests in the house, Jennifer (a family friend) and Nicole (Nancy's niece) who have taken care of her all week. Tonight other family members are coming for dinner, so we get the joy of cooking and entertaining. Normalcy is a state of mind.

Her doctor has approved a trip for us up to our cabin near Mt. Lassen...the issue is distance from the nearest hospital, just in case she has some reaction or transplant issue pop up. His point of view is that we're fine as long as we (actually, I) keep awareness of travel time to the nearest hospital. Even as a mentally-oriented, somewhat paranoid person, that's an extreme practice for me. We're going to a friend's wedding in Palo Alto this afternoon (sitting in the back to avoid the crowd) and I'm checking Google for all hospital locations along the way. Ironically, the closest hospital to our destination is Stanford University Medical Center (an incredible place for cancer care) with El Camino, the beautiful interior architecture project Nancy completed last year, a close second.

Warm regards and love from sunny Fairfax,

Tuesday, May 10, 2011

We love boring

Hello, all!

The news this week is, really, um, nothing to report. Nancy is continuing to do well, no issues or problems. She is a poster-child transplant patient, and we love how boring the last 12 days have been. It's really hard to believe that it's only 12 days...we're living in a different universe (again) with her at home, and the four weeks in the hospital seem like another lifetime already.

Speaking of lifetimes, she was first diagnosed as a probable leukemia patient exactly four months ago today. That was several universes ago.

So there are a few boring details. Nancy's appetite is still not great, and she has some nausea from her medications. But her sense of taste is improving (chemo really wiped out her taste buds), and she isn't losing weight any more. She wouldn't mind getting back to her collegiate stick-figure, but her doctors and I are firmly against it :-)

Some of her medications are being adjusted downward, and there are indications that she will be going off of them a little sooner than most patients...though she'll still be on them for perhaps two more months. The main immuno-suppressant drug that helps avoid immune system reactions is also slowing down the engraftment process, so the dose has been dialed back. In some way, the last four months have been a pharmacological journey, a drug-controlled, ever-adjusting trip. Her doctor has us looking for continuous small improvements, and this is what we've seen so far...more sense of taste, fewer drugs, more strength. This is the path to recovery.

And odd medical stuff continues to happen around us. The Mystery of all of this deepened when our 14-year-old german shepherd was diagnosed with a bladder cancer last week. I just brought her home from UC Davis tonight, with a stent installed in her urethra so she can pee again. She is back to her frisky loving self, and we hope to have a whole summer of fun with her. Life is fragile, let's embrace it!


Sunday, May 1, 2011

My prince is taking me home today

Nancy, and everyone...

I am of course deeply touched by your very lovely note. I feel very seen and appreciated, and I love you very much.

For everyone else who has been on this journey with us, I want you to know that we are indeed home since Friday evening, and everything has gone very well through our first weekend. I had to harangue a few people to get Nancy's intravenous electrolytes and equipment delivered on Saturday, but it happened, and we are now holding our own medical journey. Nancy takes various meds at five different times throughout the day, starting at 6am. She also gets an IV for two hours, and several of us are all trained in the sterile procedures required to deliver the IV and flush and care for Nancy's Hickman catheter. Nancy's been on a couple of walks, still tires easily, and has to heavily protect herself from the sun because one drug makes her very sensitive to UV. All is going as well or better than I hoped.

We've also had the pleasure of a few visitors, fixing dinner together, and I even had a few hours off last night to go listen to live music for the first time in many months. Some of you have been volunteering to help, and I really appreciate you. With your assistance, we have 24x7 coverage set up through May.

For those of us at Nancy's ritual four weeks ago, here is a Red Thread update. Mine fell off yesterday. Apparently it was time for mine to go, in fact, I don't know where it went! In Buddhist tradition, the Thread is left on our wrists until it falls off of it's own accord. Nancy's journey has many weeks and months to go, so I ask you to allow your thread to find it's own ending. When it's time, it will break, disappear, untie, or whatever it needs to do.


On Apr 29, 2011, at 4:49 PM, Nancy Jones wrote:

> All,


> Today Prince William and Katherine Middleton are celebrating their royal wedding day and Tom and I will be celebrating my return home. Tom is picking me up @ 6:00 pm and I will begin a long recovery process @ home.


> Tom, this e-mail is for you. I want to thank you for being the rock that has held me through this cancer journey. I will never doubt your love and commitment to our vows. I know this journey has been especially difficult for you; caring for me, our pets, your mother, working everyday and juggling our finances. You have given " keeper of the flame " new meaning.


> I love and appreciate you,

> Nancy